Wednesday, April 29, 2009

My earlier post The Mirage of "The Cure" reminded me of a book by Abraham Verghese. In My Own Country: A Doctor’s Story of a Town and its People in the age of AIDS he described the mood of the medical community during the early years of AIDS. It was a time of "unreal confidence", and he vividly tells what it was like to be in the medical community when it seemed to know no obstacles.

Here are some passages:

I remember as an intern in 1981 reading a New England Journal of Medicine article with the curious title “Pneumocystis carinii Pneumonia and mucosal Candidiasis in Previously Healthy Homosexual Men—Evidence of a New Acquired Cellular Immunodeficiency.” It described the seminal AIDS cases in Los Angeles. Companion articles described cases in New York and San Francisco. Three things about these reports stayed in my mind: gay men, immune deficiency, and death.

The month the first papers on AIDS came out, the disease became a topic for late-night, idle discussion in the Mountain Home VA and Miracle Center cafeterias. ... We were seeing in our lifetime, so we told ourselves, yet another new disease. And surely, just like Legionnaire’s, Lyme disease, toxic shock—all new diseases—we felt this new disease, this mysterious immune deficiency, would soon be understood and conquered.

Although unexpected new diseases kept cropping up, this had not yet dented the profession’s confidence that they “would soon be understood and conquered.” Why was this so? Because of the enormous progress that had been made, because what was now routine was so amazing. We had progressed, if that’s the right word, to the point where we could treat the person as machinery, we could see the human body as a set of systems that we could control:

To say this was a time of unreal and unparalleled confidence, bordering on conceit, in the Western medical world is to understate things. Only cancer was truly feared, and even that was often curable. When the outcome of treatment was not good, it was because the host was aged, the protoplasm frail, or the patient had presented too late—never because medical science was impotent.

There seemed little that medicine could not do. As a lowly resident, I was inserting Swan-Ganz catheters into the vena cava and the right side of the heart. Meanwhile, the cardiologists were advancing fancier catheters through leg arteries and up the aorta, then using tiny balloons to open clogged coronary arteries or using lasers in Roto-Rooter fashion to ream out the grunge.

Surgeons, like Tom Starzl in Pittsburgh, had made kidney, liver, heart and heart-lung transplantation routine and they were embarking on twelve- to fourteen-hour “cluster operations” where liver, pancreas, duodenum and jejunum were removed en bloc from a donor and transplanted into a patient whose belly, previously riddled with cancer, had now been eviscerated, scooped clean in preparation for this organ bouquet.

Starzl was an icon for that period in medicine, the pre-AIDS days, the frontier days of every-other-night call. My fellow interns and I thought of ourselves as the vaqueros of the fluorescent corridors, riding the high of sleep deprivation, dressed day or night in surgical scrubs, banks of beepers on our belts, our tongues quick with the buzz words that reduced patients to syndromes—”rule out MI,” “impending DTs,” “multiorgan failure.” We strutted around with floppy tourniquets threaded through the buttonholes of our coats, our pockets cluttered with penlights, ECG calipers, stethoscopes, plastic shuffle cards with algorithms and recipes on them. The hemostats lost in the depths of our coat pockets were our multipurpose wrenches and found uses from roach clips to earwax dislodgers. Carried casually in sterile packaging in our top pockets were seven-gauge, seven-inch needles with twelve-inch trails of tubing. We were always ready—should we be first at a Code Blue—to slide needle under collarbone, into the great subclavian vein, and then to feed the serpent tubing down the vena cava in a cathartic ritual that established our mastery over the human body.

With this modern technology at our disposal, no medical problem would resist our efforts for long:

There seemed no reason to believe when AIDS arrived on the scene that we would not transfix it with our divining needles, lyse it with our potions, swallow it and digest it in the great vats of eighties technology.

As I write this, it is difficult to imagine that unreal time, 1983, in the history of AIDS. Not only did we not know what caused AIDS, there was no test to say who did and who did not have the mysterious disease.

The best that doctors across the country could do was to agree on a “definition” to ensure that everyone was talking about the same entity: if one was previously healthy and, for no obvious reason, developed an infection with an organism like pneumocystis or even developed Kaposi’s sarcoma, one had acquired immune deficiency syndrome. AIDS.

It seemed for a while that the confidence was justified, as real progress was indeed achieved:

Towards the end of my fellowship came the exciting news that Gallo and Montagnier (or Montagnier and Gallo depending on whom you believed—this too was part of the excitement: the personalities and the rivalries) had discovered that AIDS was caused by a virus: HIV.

A test to screen blood for HIV was rapidly-developed, and it was confirmed that all those who had AIDS carried the virus in their bodies.

Tuesday, April 28, 2009

We are wasting our lives waiting for miracle cures. That’s the sense I get from some recent health news.

Hoping for a cure is one thing. Working towards a cure, that’s understandable. Anyone who suffers from an illness, whether it's just the common cold or something much worse, surely wishes that it will go away and won’t ever happen again. But, recent news is not hope inspiring.

Geneomics: Show Limited Value in Predicting Disease

Recent advances in decoding the genome has led many to predict an age of “personalized medicine”. The notion is that we would soon learn which gene was responsible for which disease. Then, we could give an individual advance warning that he is likely to get a specific disease so he can take appropriate preventive action or plan life accordingly.

Things haven’t worked out that way.

The April 23, 2009 issue of the New England Journal of Medicine has several articles (see here, here and here) reviewing the progress made in understanding the relationships between genes and diseases.

A New York Times story summarized the results: “The era of personal genomic medicine may have to wait. The genetic analysis of common disease is turning out to be a lot more complex than expected.” The scientific method used in the genomic studies turned out to be more successful than expected, but what has been learned is different than what people had hoped. “Unlike the rare diseases caused by a change affecting only one gene, common diseases like cancer and diabetes are caused by a set of several genetic variations in each person.” One of the authors, Dr. David B. Goldstein of Duke University, writes that “In pointing at everything, genetics would point at nothing.”

Basically, except in rare cases, we’re unlikely to find a simple relationship between genes and disease. No magic cures here.

Cancer: Little Progress Towards Cure

Another recent NY Times article – In Long Drive to Cure Cancer, Advances Have Been Elusive – began:

In 1971, flush with the nation’s success in putting a man on the Moon, President Richard M. Nixon announced a new goal. Cancer would be cured by 1976, the bicentennial.

When 1976 came and went, the date for a cure, or at least substantial progress, kept being put off. It was going to happen by 2000, then by 2015.

The article noted that the death rate for cancer has dropped only 5% in the past 45 years, very small compared to declines in death rates for other illnesses such as heart diesease, flu and pneumonia. Progress on prevention has also been “agonizingly slow”.

And yet the popular perception is that various prevention methods (e.g. high-fiber diets) are effective, that early detection will make a big difference in disease progression, and that “miraculous treatments and more in the pipeline could cure you or turn your cancer into a manageable disease.”

The misperceptions stem from the public’s desire to have a miracle to believe in, and the profession’s reluctance to be more frank.

As a doctor who tries to be honest with patients, Dr. [Leonard] Saltz [a colon cancer specialist at Memorial Sloan-Kettering Cancer Center] says he sees the allure of illusions.

“It would be very hard and insensitive to say, ‘All I’ve got is a drug that will cost $10,000 a month and give you an average survival benefit of a month or two,’ ” he said. “The details are very, very tough to deal with.”

The public demand for an immediate, easy cure has also gotten in the way of potential progress — we want the current way to work, and so are unwilling to look at alternatives:

And for all the money poured into cancer research, there has never been enough for innovative studies, the kind that can fundamentally change the way scientists understand cancer or doctors treat it. Such studies are risky, less likely to work than ones that are more incremental. The result is that, with limited money, innovative projects often lose out to more reliably successful projects that aim to tweak treatments, perhaps extending life by only weeks.

Yet again, we are hampered by the illusion that a miracle cure exists and that we’ll get there if keep on the current path.

Seeing the Mirage

Clearly we need to do more than simply waiting, perhaps in vain, for someone to find “the cure”, do more than placing the entire burden of finding ways to improve our health on “the experts”. What else should we do? That’s a topic for other posts. But, for now, not giving in to the mirage is a start.

Monday, April 27, 2009

Over on the Aging In Place Technology Watch blog, Laurie Orlov writes about all kinds of things, especially technologies, that effect our ability to live in our own homes as we age. Today, she covers a variety of new products. In addition to Zume Life, the must-have self-care system for anyone with a chronic illness, she describes products that provide audio entertainment for seniors, make computer usage easier, help find and manage professional caregivers, provide medication reminders, and provide an emergency communications system.

Sunday, April 26, 2009

Some time ago I went to a talk at my local public library given by Dr. Walter Bortz, a professor of medicine at Stanford University (and many other active roles). He is also the author of many best-selling books including Dare to be 100: 99 Steps to a Long, Healthy Life, Living Longer for Dummies, and Diabetes Danger: What 200 Million Americans at Risk Need to Know.

He likened people’s health and longevity to that of a car, and said there were four key factors: Design, Accidents, Maintenance and Aging.

DESIGN: If a car isn’t well designed or well manufactured it’s going to fall apart quickly no matter what you do. Toyotas seem to last forever whereas the Yugo was derided as not being worth it at any price. For people, design basically means what we inherit in our genes. We have no choice in the matter, but Dr. Bortz noted that our genes influence only about 15% of our health.

ACCIDENTS: These are things that happen to you over which you have little-to-no control. If you car gets driven off a bridge, or some truck rams into it, there’s little your poor car can do about it and it’s “health” will suffer. Similarly for people there are accidents (get hit by lightning, tree falls on you, etc.) and also malignancies (nasty bugs, viruses, bacteria, chemicals, etc.) that you cannot avoid. Accidents used to be the major cause of death in times past, but advances in public health, medicine, and health care mean that today accidents are much more survivable.

MAINTENANCE: For cars this means changing the oil, tuning the engine, replacing worn parts, rotating tires, etc. – do these poorly and you may lower the lifetime of your car substantially. For people this means the food we eat, whether we abuse / overuse / underuse our bodies. Basically how well we take care of ourselves. Dr. Bortz stressed that this is the primary influence on our health & longevity today.

AGING: We’re eventually going to die no matter what we do. Same with our cars, although you could theoretically replace every single part with a new one and still think of it as the same car. But, how well we do maintenance can have a big impact on the rate of aging of our cars and our bodies.

Dr. Bortz is a man on a mission to get a good chunk of the trillions of dollars we spend on health care, mainly devoted to dealing with accidents and aging, to be devoted to maintenance instead.

I think this car analogy can be very useful especially in highlight how much we are unlike cars.

A recent personal example hammered this home. The front doors’ windows and door locks of my car stopped responding to the appropriate buttons. This seemed like a simple problem ... must just be a fuse or a loose wire somewhere! Little did I know. My local mechanic spent a day trying to fix it, taking apart both doors and the central control panel in the process. Things miraculously started working properly, but he had no explanation. A few weeks later the problem returned. This time I took it to the car dealer. They charge a higher rate, but since they should know what they’re doing at least it would get fixed properly. Their mechanic spent half a day, replaced some very expensive parts and charged me a lot of money. Next day the problem reappeared! Back to the car dealer. This time the mechanic and the foreman spent a good part of a day fixing things properly. It turned out that there was a malfunctioning component elsewhere in the car that was causing an electrical noise that in turn has resulted in the problems I was having. Now, my car comes from a firm renowned for its engineering and is that company’s most common model. It is designed to exacting specifications and manufactured in the millions. My car has never experienced anything particularly unusual (no significant accidents), and has generally been maintained on schedule by the dealer’s own service department. And yet they tell me they have never experienced such a problem and (obviously) it took a lot of experimentation and guesswork to figure it out.

If cars can be difficult to diagnose and maintain, what about people? Compared to a car our bodies are far more complex systems and experience much more complex lives. If such a well-designed, well-maintained car can be so difficult to diagnose and fix, is it reasonable to expect simple fixes for what ails our bodies?

Friday, April 3, 2009

Today, a friend told me this wonderful quote: "You can have lice and fleas at the same time." He says it is from Sir William Osler, a Canadian physician (1849-1919), who some refer to as the most influential physician in history.

Some further data (from the Jan-Feb 2009 issue of Health Affairs): "In 2005, 133 million Americans were living with at least one chronic condition. In 2020, this number is expected to grow to 157 million. In 2005, sixty-three million people had multiple chronic illnesses, and that number will reach eighty-one million in 2020". Elsewhere in the same issue, a table showed that in 2005, amongst working age Americans (ages 20-65) 12% or over 21 million had three or more chronic conditions.

Multi-morbidity is neither well understood nor well managed by the medical community

Yet people with multiple health problems – a condition known as multimorbidity

– are largely overlooked both in medical research and in the nation's clinics and

hospitals. The default position is to treat complicated patients as collections of

malfunctioning body parts rather than as whole human beings. ...

And treating one disease in isolation, [Dr. Mary Tinetti, Yale] added, can make

another disease worse. In controlling diabetes, for example, doctors often seek to

reduce levels of a blood-sugar marker called hemoglobin A1C. "But we know that

for some people with complicated diabetes, that's not always the best move,"

Dr. Tinetti said. ...

... patients with multiple diseases are routinely shut out of drug trial. A 2007

study found that 81 percent of the randomized trials published in the most

problems. "We often don't know what the real safety or efficacy is for patients

with multiple illnesses," said Dr. W. Douglas Weaver, president of the

American College of Cardiology. ...

Because so little research includes complicated patients, physicians have little

scientific evidence on which to base their care. ... "We're so far away from

having perfect evidence about how to help patients with complex health

problems," Dr. Cynthia Boyd [Johns Hopkins] said.

Why this doesn't get more attention

In a medical system geared toward individual organs and diseases, there is no

champion for patients with multiple illnesses – no National Institute for Multi-

morbidity, no charity Race for Multimorbidity Cure, no celebrity pressuring

Capitol Hill for more research.

And that, sadly, is the underlying issue. The focus on the "glamour diseases" – diabetes, cancer, HIV/AIDS, Parkinsons, etc. – and the competition amongst their advocates seems to keep us from addressing the real issue: the health and well-being of the person.

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About this blog

Living is about much more than health, though good health is required to fully enjoy life. Healthy living, in the context of our busy lives, is a complex, never ending dance. What is "healthy" and what one can and should do to stay healthy varies tremendously by person and by context. Our personal, on-going health is not and cannot be the responsibility of the healthcare industry and medical community. Our lives are too complex for their limited reach. The focus of health efforts must be on self-care, on what we and our families do in our own lives, in our own homes. This blog is about what we (people) are doing about our health, what we want to do, and how and why our efforts sometimes coincide but often conflict with healthcare.